Tuesday, November 29, 2011

If you read yesterday's post, you know that over the long weekend I "met" some wonderful folks via Twitter hashtag #youmightbeanautismparentif. One of those folks is Heather McCracken, founder and executive director of Friend 2 Friend Social Learning Society. This is her story ~

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Necessity is the Mother of a Child On the Autism Spectrum

I will never forget the moment my son was diagnosed…I started to cry, but not because I was upset that the doctor had agreed with my suspicions. I cried out of relief that someone finally saw what I saw, that someone finally believed me. Up to that point I had been on my own. After eighteen long and torturous months and an incredible twelve different physicians finally, on a rainy day in December, one doctor had the courage to agree with a mother's intuition.

What I did not know was that the events of December 4, 1995 would alter the course of my life. My path from that moment forward was a journey with one goal – to ensure that son Iain would know that he was accepted, understood and loved for who he was within his family, his community and his peer group.

My son, like so many others I know on the autism spectrum, wants the one thing that most individuals his age want - to have friends. All individuals regardless of their unique challenges or gifts have the intrinsic need to play, make friends and be accepted for who they are. Individuals with autism are no different; they just express this need differently.

Fast-forward three years to when Iain started kindergarten. Watching him suffer from this social isolation in the school environment, I felt compelled to do what I could to change this situation, not only for my son, but also for other children who experience these same social difficulties. In 2002, after several years of research I designed the Friend 2 Friend Autism Demystification model and programs and founded Friend 2 Friend Social Learning Society, a non-profit charity based in Vancouver, British Columbia Canada.

The Friend 2 Friend Model works to promote understanding, acceptance, and empathy in an effort to foster mutually rewarding friendships between children with autism spectrum and related social communication disorders and their peers, siblings and classmates. This is done by designing and providing programs using age-appropriate tools such as puppets in the Friend 2 Friend Puppet Program for children ages 3-12, and a sensory Simon Says game as part of the Friend 2 Friend Simulation Game Program for children ages 12 and up.

Our autism demystification programs work to build a general knowledge of autism by modeling characteristics of autism, labeling those characteristic with their proper names, explaining the purpose of those characteristics and finally -- but most importantly -- normalizing the characteristics, comparing them to conventional characteristics that many people have. The Friend 2 Friend model and programs also teach prosocial communication strategies to all of the children (both on and off the autism spectrum). These strategies work to promote social communication competencies in all children and provide a framework for children to feel confident in social interaction with one another. This well-researched, structured teaching model makes up the Friend 2 Friend model and is the basis for all of the programs we design.

In 2002, Friend 2 Friend began field-testing the model and delivering our first program -- the Friend 2 Friend Puppet Program. That year we (two volunteers and I) provided 35 presentations, seeing approximately 1700 children in schools, preschools and daycares in North Vancouver.The following school year (2003-2004) we provided 287 Puppet Program presentations seeing over 14,000 children in schools throughout the lower mainland of BC. The demand for the Friend 2 Friend programs increases yearly and now in our 9th year of operation and fast approaching our 10th anniversary, Friend 2 Friend Social Learning Society provides a host of programs including our signature Autism Demystification programs, our Friend 2 Friend – Integrated Play Groups program, training seminars and conferences such as our satellite training programs, Can I Play Too? Community Capacity Building Project, and our publications program.

In 2012 we are working hard to establish the Friend 2 Friend Play Centre, a state-of-the art peer play centre combining a research-based awarding-winning SCERTS®, IPG® and F2F models.

Since our humble beginnings a decade ago, Friend 2 Friend has delivered our Autism Demystification programs to over 130,000 children and 30,000 adults. We have established two satellite partners in Calgary, AB and Burlington, VT, published three self-use autism demystification packaged programs that are subtitled in the 6 UN languages and sold worldwide, and we have delivered over 75 Integrated Play Groups Programs and 200 seminars.

I have to admit that when I founded Friend 2 Friend Social Learning Society and started designing and implementing the Friend 2 Friend Autism Demystification Programs I never imagined for one moment that I would travel the world helping parents and professionals implement the programs. I also never imaged that I would be sitting at a university waiting for my son Iain to finish classes for the day while I wrote this article.

The road we travel in the world of autism is long and winding but it is an amazing ride filled with the joy of acceptance, understanding, empathy and friendships for our children and for ourselves. It is my hope that the Friend 2 Friend programs have and will continue to help make the road a bit smoother for many individuals on the autism spectrum and their peers.

Through the Looking Glass Contributor: Heather McCracken is the founder and executive director of the Friend 2 Friend Social Learning Society. She is the creator of the Friend 2 Friend model and programs and a mother of three (Katie, Iain and Emma); her son Iain is on the autism spectrum. Heather actively designs and delivers social, communication peer play based programs for children ages 3 through 18 in schools and other community settings throughout North America and abroad. She an international speaker and widely published, author of "That's What's Different About Me", "Can I Play Too", "Demystifying Autism", and coauthor "Learners on the Autism Spectrum."

Monday, November 28, 2011

If you haven't - you should. It's been steadily growing. The idea for the twitter party was started by Many Hats Mommy and the hashtag was created by @RaisingASDKids.

Honestly up until a few days ago I wasn't one for twitter. I didn't really get it, couldn't keep up - I didn't really understand the point of the hashtag. But since I've been participating in the #youmightbeanautismparentif twitter party, I've been a tweet freak. I think I've come out of the Twitter closet and now ready to embrace @LaliQuin (my twitter name).

I'm throwing out hashtags and retweeting and replying to tweets. (Ok, still working on my response time.)

And when @HollyRod4kids retweeted ME. I yelled out - OMG! Because that's the kind of Twitter dork I am.

The absolute best part of this ongoing twitter partyis that I've connected with so many people, I may not have met otherwise. I'm laughing and crying and nodding my head because the things other parents are writing I totally get. Because it's always nice to know I'm not alone in my thoughts.

Sunday, November 27, 2011

It happens every semester around this time. With three weeks left, papers, presentations & short stories are due - and I've fallen horribly behind. This semester more than ever. The 2 graduate classes I've been taking are kicking my butt. Trying to juggle school, work, laundry & all the stuff going on with The Boy - well, it's tough.

I am not Super Woman. I am Procrastination Woman.

So on this beautiful November Sunday, I have kicked The Husband and The Boy out of the apartment. I have a presentation paper that I need to email my amazing, talented and wonderfully understanding professor by tomorrow morning.

I've had this paper written in my head for weeks. And (in my head) it's brilliant! Let's just hope I can put the brilliance on paper.

Friday, November 25, 2011

~~ While I'm sure everyone is still munching on Thanksgiving homemade leftovers - tonight we will be dining on restaurant leftovers. I just didn't have it in me to cook this year. I do have half a homemade flan in my fridge that I plan on devouring. Normally, I could do without flan but there's this woman at work who makes them and they are AMAZING!

~~ We took The Boy to see the Thanksgiving Day Macy's Parade yesterday - luckily my office hosts a viewing party and we had a sweet view of floats. Best part? We were in doors! Free bagels, free cupcakes, free cotton candy - Oh My! Because there's nothing like cotton candy at 8:30 in the morning.

~~ Today I ran some errands with The Boy. Had to stop at the eyeglass spot to place an order for new contacts. The Boy was restless. Bad mommy that I am, forgot to bring a fidget toy.

"I want to go home," he said.

"After here, then the meat market and then home," I explain

The lady at the eyeglass place said, "The meat market? They are going to chop you up." I know she was just trying to be friendly and playful. But damn, my kid has autism aka LITERAL THINKER. Please don't tell him Joe the Butcher at the meat market is going to chop him up. Thanks.

Wednesday, November 23, 2011

Tomorrow, I'm going on strike. I'm not cooking. I cook 364 other days of the year, I'm entitled to a break. Okay, that's a lie - I don't cook 364 other days of the year. But I do know that I've spent the last 8 years slaving away in the kitchen for days before, during and after over a meal I don't even like. I don't like turkey. Or sweet potatoes or gravey. Hell, I just started to eat pumpkin pie last year.

Tomorrow, we will take a trip into the City and watch the parade (fingers crossed that The Boy likes it) and order Chinese or Mexican.

For me, Thanksgiving has never really been about the meal - it's about the feeling of togetherness - whether it's with family, friends or the friends that have replaced family. Thanksgiving is about sharing. Talking. Laughing with the ones we love. But most of all - looking back and reflecting on all that we are thankful for.

Tuesday, November 22, 2011

It happened in Target of all places, on a Sunday afternoon.The husband had wandered off while I pushed The Boy around in the cart; though at four years old, The Boy was well over the weight limit.It was easier to shop, if he was contained.

Through the corner of my eye, I saw a woman. Unlike my frantic sloppy ponytail and my smear of cherry chapstick, the woman had time to fix herself before facing the world.Her hair was neatly combed back in a ponytail; she wore bright coral lipstick, boot cut jeans and brown boots with kitten heels. Her nails were filed square and painted ivory. My nails were bare and bitten down.

I realized she was a mother.She had one manicured hand on the handle of the shopping cart.Her son lagged behind.Every so often, her son wandered off.When the mother called out a name, her son instantly reappeared. Her boy was probably a year older than mine.

I could never shop like that.High heels were impractical when out with The Boy.I never knew when I needed to run. And there was no letting go of his hand. If I let go, he’d wander away; the warmth of my hand would go unnoticed.If I called out his name, he would ignore me, stuck in stim.If he ran off, The Boy would never tell a stranger his name.Not because he didn’t know it or couldn’t say it, the question just needed to be asked several times before The Boy provided a response; if he provided a response.And it was unlikely that The Boy would look a stranger in the eye.A stranger would give up.And The Boy lacked the cognitive ability to say that he needed me or missed me.The Boy was a kidnapper’s dream. No, I could never let go.

I wondered what that mother’s life was like; I wondered about the dynamic of her relationship with her son.I was certain that she never had a team of therapists in and out of her house.When she asked her child a question, he looked her in the eye and answered back.And when she kissed that child goodnight, he would automatically say the three words every mother longs to hear, without any prompting and with genuine feeling.When she let go of his hand, she knew he would return.

Her boy wanted to start writing his Christmas list.He wanted a new scooter and some video games.The mother smiled and she said something that I did not hear.I stopped listening.It was hard to listen to their exchange and not feel envious.

We approached the baby section and The Boy attempted to stand, reaching out for the infant toys, his hands flapped with both excitement and frustration, bird-like sounds coming from his mouth.“Sit down. Use your words.”I said in a firm tone of voice used by therapists.

The Boy had words, lots of words actually – hundreds, maybe thousands.But he used them sparingly and hardly spontaneously.Most of his speech was scripted, memorized from books or cartoons.

“Mommy.I want the toys please,” he asked.

The Boy’s words were stilted, his high-pitched voice void of emotion.With each syllable his head bobbed like a marionette.

“Fix it.”I said.

The Boy repeated the request in his natural voice.Though his tone was deeper, it still lacked affect.Words can be taught, emotional tone is much harder.

We moved slowly through the aisles.The store was crowed with holiday shoppers; the toy shelves were filled to capacity, not an item of out of stock.Women walked with circulars in their hands, looking for sales; searching for price check machines.

The glitter and sparkle of the Christmas decorations reminded me that I needed to buy a tree and pull the decorations from storage.

“Oh my!Look at all these decorations,” The Boy said in his high-pitched voice.His words were crisp and clear.His facial expression was appropriate: happy and wide-eyed.He pointed.And I was surprised that he knew the word “decorations.”

I pushed the cart closer to the decorations.There were Christmas trees and wreaths, stockings and snowmen, candy canes and bright bulbs.I didn’t care if he flapped; he was excited.

“What are the decorations for?” I asked.

The Boy looked me right in the eye. “For Christmas! C is for Christmas.”

The Boy kicked his legs against the cart.He smiled the smile that I loved; it belonged to a four year old boy who was neither typical nor atypical; with dimples in each cheek, his eyes squinted and his nose scrunched up.

I laughed.“That’s right! Who comes on Christmas?”

“Santa Claus!”

“And what does Santa Claus bring?”

“Presents!”

I praised The Boy again and again.Gave him a hug and kissed his cheeks.I must have looked like an idiot, making such a big deal over such a little thing.

It was the first real conversation we ever had.In that moment I forgot The Boy had autism.I forgot about the mother in her kitten heels and her son with his Christmas list and my seconds of envy.I forgot that a doctor once said, The Boy might never utter a word.I forgot about all the hours of speech therapy that were needed to get to that simple conversation.

I was just a mother and he was just a little boy, excited about Christmas.And maybe letting go of his hand was not so far away.

Monday, November 21, 2011

There are moments in our life that define us; moments that can make us better or make us bitter.

An autism diagnosis is one of those moments. It's not only a life altering moment for a child, but for the parent. The moment a parent hears: Your child has autism. Your world will change. And you can either let the diagnosis destroy you or you can make peace with it.

My suggestion? Make peace with autism. Because it's going to be around for a while. Might as well get to know it.

A while ago I read a comment by a special needs parent. And it was basically criticizing parents of special needs kids. It went something like: Parents who say autism makes them a better person are full of it.

Ultimately, it's not about becoming a better parent, I think it's about adopting a different parental attitude.

Raising a child with autism is hard. It's probably the hardest thing I've ever done. There are days when I'm tired of dealing with it. And when I say "it," I don't mean autism itself - I mean everything else that comes along with autism.

The therapies. The non-stop appointments. The evaluations. The meetings. Fighting for services. Securing appropriate school placement.

The staying up late, reading through Special Education laws, tweaking IEPs or just unable to sleep worrying about the future.

Making peace with autism, doesn't come immediately. It's a process. And some days are better than others. There are times when I cry and I feel helpless. Because it is hard when you don't have the means to do all that you can.

Nothing would be easier than sitting back and throwing myself a pity party. But who the hell wants to go to that?

It would be too easy for me to write about all the things The Boy cannot do. But what would be the point?

Quite honestly, it makes me sad to focus on those things. There are so many things, I would love to see The Boy do. So many things that would make me jump up and down with silly happiness. But I have to remind myself, the things that may make me happy - probably don'tmatter to The Boy.

The Boy is happy. Just as he is. Doing what he does. And that's what I choose to focus on. The things that make him happy. And all the things he can do. Because there is so much he can do. I have a lot to be proud of. And I have so much to be thankful for. That's what I want to concentrate on.

Autism has made me better because its forced me to have a different attitude. It's given me a new perspective on happiness. It's taught me to appreciate the day to day moments - like a smile, a wave or a spontaneous word. No accomplishment is taken for granted. Ever.

And during those moments, when I cry and feel defeated by the Department of Education all I need to do is look at The Boy. He gives me the strength to keep going. He is my proof that I am doing the right thing.

For those that know me personally, you know I can be a bit of cynic. I see the glass half empty on many things.

But when it comes to The Boy, his progress and our life - I refuse to have that mindset. I can't and I won't. Because if I can't believe in him...who will?

Friday, November 18, 2011

Sometimes dealing with the Dept of Education makes me feel like a single girl again - desperately searching for The One.

You may remember the routine. Getting dressed up. Going out to the bar/club with your girlfriends. When suddenly an amazing looking guy smiles at you and buys you a drink. He says all the right things. All the things you want need to hear.

And before you both have finished drinking your drink, you've created this entire movie montage in your head: courtship, proposal, wedding, honeymoon, big house, 2 kids, maybe a dog, growing old (surrounded by grand kids), until you both die on the same day holding hands, like that couple you read about in that yahoo article.

You exchange numbers. He says he'll call you.

And then you wait.

And wait. And then you decide to call, only to get his voicemail. So you leave a message.

And wait some more. And you call again because maybe he lost your number, or didn't save it into his phone properly or accidently deleted your voicemail where you left your number again. So you leave another voicemail and wait...

Until you realize the phone call you've pinned all your dreams on, is never going to happen. He's not The One. And the promises made during that brief encounter, were nothing but words.